Songbird,

CRPS is a bizarre and gruesome affliction. No one really understands it or knows how to cure it. We, those who have it, must use whatever tools there are to help others understand. Have you heard of the Spoon Theory? You might want to share this with your family, it might help them understand and it might help you, too. Yes, we want to do more, but we are limited by pain and a lack of energy. It is a fact that we cannot change.

The best we can do is to simplify our lives so that there is less to care for and less work for everyone.

It won't hurt your daughter to do things around the house, in fact, in the future it will help her with time management and it will give her confidence that she can do household tasks with speed and proficiency. Since most of us don't have home help when we grow up and get jobs and our first apartment, it is an advantage to be skilled in the home arts.

I had a terrible conversation with a friend recently, who LOUDLY insisted that I did not have CRPS, because according to her I was "self-diagnosed." I was speechless, because no less than four doctors have diagnosed me, using not only the Budapest Criteria, but X-rays which showed severe patchy osteoporosis. She rambled on and on that I should see a neurologist in Florida, who as far as I know has no expertise in CRPS, but is a well-known author.

Another friend will not understand I can no longer visit her, 1., because I cannot walk down the long corridors to her apt and 2. , because I have to be in bed by 8:30pm.

I am doing my best to understand that they do not understand and it is hard.

My husband used to travel and it was up to me to do it all. He also had a chronic
pain problem for years so I could not rely on him for anything. Since CRPS happened to me after my husband stopped traveling and he was no longer in pain I was lucky, because he is in a position to help. Without him I would have needed considerable home health.

Your circumstances are challenging and you need to sit down with your family and brain storm, to figure out what changes you can make so that you can more gently live through this.